泳者無懼的見證：一位小腦萎縮症病友的運動生命敘說

The Witness of a Fearless Swimmer: The Narrative of a Spinalcerebellar Ataxia Patient's Sports Life

10.6782/BCJ.201106.0117

惲大宗(Da-Chung Yun)；許光麃(Kuang-Piao Hsu)

小腦萎縮症 ； 運動生命 ； 敘說探究 ； Spinalcerebellar Ataxia ； sports life ； narrative inquiry

身體文化學報

12期（2011 / 06 / 01）

117 - 141

繁體中文

本文是一篇小腦萎縮症病友的運動生命故事。「全哥」是一位與病症共存四十三年的朋友，研究者透過深度訪談、文本蒐集以及參與觀察的方式，探索小腦萎縮症患者從發病起始，自身所面臨的時空、事件與身心歷程，選擇投入運動訓練後，對自我身體意識與生命意義的轉折與突破。本研究採用Gruber和Wallace提出的進化系統取向之個案研究作為研究的理論框架，依據McAdams的訪談大綱，嘗試建構全哥的運動生命全貌：刻苦艱困的童年憶往、小腦萎縮的病況初生、運動復健的奮戰道路、百折不撓的鬥志浮沉、甘苦與共的病友夥伴、知命樂天的游泳人生。研究結果發現，透過本篇的生命故事，首先能夠深入體察，運動經歷對於個人發病的前後意義之「脈絡循跡」；再者，理解小腦萎縮症病友運動參與社會現況之「問題澄清」；最後，則呈現了弱勢族群吶喊心聲之「生命縮影」。雖然本文描寫的僅是個別的生命經驗，仍盼望這一條超越身心禁錮、病體糾纏下發展出來的「泳者之道」，提供了另一幅生命圖像的獨特展現。

This study is a Spinalcerebellar Ataxia (SCA) patient's life story. The participant is a patient who has had SCA for forty-three years. The researchers used the depth interview, the text collection, and observation to explore the SCA patient's life from the disease initiation, his physical and mental process during the time, and to his self-body awareness and the meaning of turning point in his life after he chose to put into exercise training. Gruber and Wallace's evolutionary systems as a research case study are used to be the framework in this study. According to McAdams's interview outline, the researchers tried to construct the whole picture of the participant's sports life: his hard difficult childhood memories, the incidence of cerebellar atrophy, the process of exercise rehabilitation efforts, the rise and fall of his indomitable fighting spirit, the company of other Spinalcerebellar Ataxia patients, and acceptance of fate in his swimming life. The results showed that through this life story, the researchers could first understand, in depth, the meaning of the exercise experience before and after the incidence of the disease to the participant. Further, they could clarify the question about the social situation of sports participation of the Spinocerebellar Ataxia patients. Last, they could present the voices of disadvantaged groups. Although this study only described the experience of an individual's life, it is looking forward to providing a unique life of the Spinocerebellar Ataxia patient who could get beyond his physical and mental barriers and developed his swimming life.

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